eha milan 2025 poster 1

An allogenic stem cell transplantation (alloSCT) is often a critical treatment in the disease course of children with leukemia, or other life-threatening conditions. Despite the medical safety of stem cell donation, the psychosocial impact on sibling donors is complex, encompassing both distress and emotional benefits. In a poster presented at EBMT 2025, Dr Victoria Bordon discussed the results of a qualitative study that explored the lived experiences and relational significance of minor sibling donors to enhance psychosocial care and address their unique needs effectively.

In total, 13 participants, who donated stem cells as minors between 2010 and 2023, were recruited. Semi-structured interviews were used to collect data, focusing on participants’ perspectives on self-esteem, family relationships, and emotional challenges. Interpretative Phenomenological Analysis (IPA) was applied to analyze interview transcripts, identifying themes that encapsulate the donors’ unique experiences.

The study revealed 4 key messages

1. Family Comes First: Donors described feelings of loyalty and familial obligation, often viewing the donation as a duty rather than a choice. Pressure from medical urgency and moral expectations was significant, yet gratitude from family members varied, influencing relational dynamics.
2. Seeking Connection: Many donors expressed a strong desire for proximity to their sick sibling, both emotionally and physically. Witnessing the transplantation process provided a sense of affirmation and emotional connection.
3. Standing in the Shadows: Participants often felt overlooked, prioritizing their family’s needs over their own. Feelings of neglect and loneliness were compounded by a lack of acknowledgment of the emotional impact they endured.
4. Influence of Age: Adolescents were acutely aware of the stakes involved, which heightened emotional strain. Younger donors, while less aware of the broader implications, experienced fewer long-term psychological challenges

As such, this study reveals that sibling donors face a multifaceted emotional journey that includes pride in helping their sibling, alongside feelings of obligation, pressure, and isolation. This underscores the importance of comprehensive, ongoing support tailored to the individual needs of the donor.